Support for Children With Epilepsy

For this profile, I would like to introduce you to my cousin and his wife, who advocate for children and individuals with epilepsy. Tim Vogus and his wife Jen Eiler Vogus are parents to Aidan, a sweet 12-year-old boy. Aidan has a rare genetic condition that had caused him to have daily intractable seizures that threaten his life (he is in the highest risk category for Sudden Unexpected Death in Epilepsy) and worsen all aspects of his development. Tim and Jen have tried multiple other ways to help their son—including 18 different medicines, special anti-seizure diets, a Vagal Nerve Stimulator, surgery, and so on—and have seen specialists across Tennessee—where they live—and throughout the country. They felt out of options until about a year ago when a colleague of Tim’s alerted him to new research that therapeutic hemp and Cannabidiol (CBD) Oil can help prevent seizures.

There is evidence from a small clinical trial that shows CBD to dramatically reduce seizure activity. A study of a couple dozen children suffering intractable seizures found that 70 percent of those treated with CBD Oil experienced at least a 50 percent reduction in seizures and also improved alertness, development, and mood. (It is important to note that CBD Oil and therapeutic hemp are not psychoactive and produce no “high.”) Clinical trials by GW Pharmaceuticals show that this treatment works to reduce seizure activity in the most difficult patients.

The seizures that Aidan and many other children live with is heart-breaking, especially when evidence shows that simply taking the oil could save lives. Currently, a bill to remove therapeutic hemp and CBD from the Controlled Substances Act is in the House of Representatives (HR 5226). The bill has bipartisan support from 38 co-sponsors and the lead sponsor is a Republican (Scott Perry of Pennsylvania). I asked Tim a little bit about his and Jen’s involvement with this bill and what he felt they had learned from the process.

“I feel like people can relate to this bill on a human level,” Tim said. “I think the politicians need to see that something is politically possible. We went to them initially pushing a full medical legalization for all kinds of medical conditions. We were told right away: ‘Not going to happen,’ but that they would be able to craft something that was individualized. It’s a little more difficult to effectuate change at the federal level; you have to get [sponsors] behind ‘the right kind of legislation.’ With a federal bill, the personal story matters, but the bill has to be palatable. Conservative Republicans are worried about getting challenged on their conservatism. We don’t show up in tie-dye shirts and dread locks, but we do show up in suits. Having the right kind of look is helpful.”

Tim, who is a professor of management at Vanderbilt University, and Jen, a special education advocate and educator, probably aren’t as likely to cultivate the ragtag look as a resident of my hometown of Eugene, Oregon, but his comment demonstrates the pragmatism that checks the actions of those in Congress. Tim said that the efforts to reschedule cannabis marijuana from schedule one criminalization to the lowest level of criminalization had not gotten much political traction. However, another effort to defund the DEA’s investigations in states with legalized medical marijuana was passed in December through Congress’s “Cromnibus” Spending Bill, and Tennessee is included in that list of states.

“We passed the state-level law, but no one has been able to benefit from the state-level law because there are federal restrictions. What we want is to be able to use things that are consistent in our state. We can’t do that without federal action,” Tim said. He told me about a little girl named Chloe Grauer, whose family closely worked with Tim and Jen to pass a law in Tennessee; Chloe recently died after a devastating seizure, a terrifying and familiar threat for parents like Tim and Jen.

Along the way, Tim said that he and Jen had been encouraged by the work of Realm of Caring and Paige Figi, the advocacy group’s co-founder and mother of Charlotte Figi, the girl who is the namesake of HR 5226. “They’re really pushing this issue and constructing a case that we’ve drawn inspiration from,” Tim said. “We draw inspiration from people who we’ve met along the way who haven’t got a voice, and also from the ‘marijuana refugees,’ [who are] people who have left Tennessee to go to Colorado.”

Tim said that while there is the possibility of treatment for Aidan in Colorado, relocating his entire family (he and Jen are also parents to a little girl named Ellie) would provide for none of the other infrastructures that they have in place in Nashville. “The fact that your zip code should determine your health care is ridiculous,” he said.

If you would like to find out more about HR 5226 The Charlotte’s Web Medical Hemp Act, you can do so here. I encourage you to take action through contacting your representative and, if you can, through meeting with him or her. Having a direct, face-to-face interaction with your representative helps to convey the urgent need that kids like Aidan have for CBD Oil.

Mary Breaden co-founded the literary journal, Visitant, with the mission of nurturing experimental writing and art.
Mary’s work has been published or is forthcoming in Bennington Review, Rabble Lit, Vol. 1 Brooklyn, Joyland, the Fanzine, and Persistent Visions, among others. She was selected as an Emerging Writer in the Lamprophonic Reading Series and nominated for a Pushcart Prize.
Follow her @MaryBreaden for updates on feminist news, biking horror stories, writing craft thoughts, and rants about her cat.